Ingabe ubuchopho bomntwana wakho bunezinkinga ezithile? Ake sifunde nge-Porencephaly.

Kuvamile ukuzizwa uthwele kanzima lapho odokotela bekutshela ngenkinga yokukhula kobuchopho bengane yakho. Ngezinye izikhathi, lawo mazwi, lawo mibandela, awajwayelekile kithi. Nokho, kukhona isimo esingavamile esibizwa ngokuthi i-Porencephaly okungenzeka ukuthi awukaze uzwe ngaso, kodwa kubalulekile ukwazi ngaso. Ake sixoxe ngalokhu kalula, ngendlela ongayiqonda, kulungile?

Kuyini ngempela lokhu okubizwa ngokuthi i-porencephaly?

Kalula nje, i-porencephaly yisimo esingavamile lapho amasaka noma ama-cyst agcwele uketshezi, noma ama-cyst, akhula khona ezindaweni zobuchopho zengane ngenxa yomonakalo. Lo monakalo uvame ukwenzeka ngesikhathi ingane isesesibelethweni noma ngemuva nje kokuzalwa. Cabanga ngakho, ubuchopho bethu buyinto eyinkimbinkimbi kakhulu. Lapho i-cyst yakheka endaweni ethile kuyo, ingathinta intuthuko evamile kanye nokusebenza kobuchopho. Lokhu kungabangela ezinye izingane ukuba zibe nobunzima bokukhuluma noma ezinye izinkinga zezinzwa .

Sivame kangakanani lesi simo?

Empeleni, lesi simo esibizwa ngokuthi i-Porencephaly singavamile kakhulu . Azikho izibalo eziqondile zokuthi bangaki abantwana emhlabeni abanaso. Kodwa singathinta amantombazane nabafana ngokulinganayo.

Ingabe zikhona izinhlobo eziyinhloko ze-porencephaly?

Yebo, kunezinhlobo ezimbili eziyinhloko zalokhu.

• I-Acquired Porencephaly: Lolu uhlobo oluvame kakhulu. Lubangelwa ukulimala kobuchopho ngesikhathi sokuthuthukiswa kobuchopho bengane.
• I-Genetic Porencephaly: Lesi yisimo esingavamile kakhulu. Singabangelwa ukuguquka kwezakhi zofuzo .

Kungani lokhu kwenzeka enganeni yethu? Yiziphi izizathu?

Kunezizathu eziningana zalokhu. Lezi zizathu ziyahlukahluka kuye ngezinhlobo ezimbili esixoxe ngazo ekuqaleni.

Izimbangela Zofuzo

Nakuba kungavamile kakhulu, lesi simo singabangelwa izinguquko, noma ukuguquka kwezakhi zofuzo, kuma-gene athile (isibonelo, ama-gene `COL4A1` noma `COL4A2` ). La ma-gene abaluleke kakhulu ekukhiqizeni amaprotheni anikeza amandla esakhiwo ezicutshini ezahlukahlukene emzimbeni wethu. Ngakho-ke, uma kukhona iphutha kula ma-gene, lingathinta isakhiwo sezicubu futhi libangele izinto ezifana nama-cyst ashiwo ebuchosheni.

Izimbangela Ezitholiwe

Lolu uhlobo oluvame kakhulu. Okwenzekayo lapha ukuthi ukugeleza kwegazi okuvamile ebuchosheni bomntwana kuyaphazamiseka. Lokhu kungabangelwa yinto efana nesifo sohlangothi , ukuntuleka komoya-mpilo ebuchosheni, noma ukopha ebuchosheni. Lo monakalo ungenzeka ngesikhathi umntwana esesibelethweni, ngesikhathi sokuzalwa, noma isikhathi eside ngemva kokuzalwa.

Uma ubuchopho bungenawo umoya-mpilo noma buphuma igazi, kungenzeka kakhulu ukuthi kwakheke izimbobo ezigcwele uketshezi esikhundleni sezicubu zobuchopho ezivamile. Lokhu kuyiqiniso ikakhulukazi uma unezici ezilandelayo eziyingozi :

• Ukusebenzisa utshwala noma izidakamizwa ngesikhathi sokukhulelwa. Lokhu kuyinto okufanele igwenywe nakanjani.
• Isifo Sikashukela Sokukhulelwa. Uma unalesi simo, kufanele ulandele imiyalelo kadokotela wakho ngqo.
• Ukutheleleka kumama ngesikhathi sokukhulelwa.
• Ukutheleleka okwenzeka ngemva kokuzalwa komntwana.
• Ukulimala ngesikhathi sokuzalwa.
• Ezinye izimbangela eziphazamisa ukuhlinzekwa kwegazi ebuchosheni zifaka phakathi ukuphazamiseka kwegazi kanye nezifo ezithile ze-metabolic .

Ngezinye izikhathi, odokotela bangathola umbono wembangela eyisisekelo ngokusekelwe ekutheni ama-cyst akuphi, ubukhulu bawo, nokuthi asakazeke kangakanani.

Ziyini izimpawu zalesi simo? Sizibona kanjani?

Izimpawu ze-porencephaly zingahluka kuye ngengane. Ziyahlukahluka futhi ngokuthi izimpawu zinzima kangakanani nokuthi ziqala nini. Ukuntuleka kwemizwa kuncike ekutheni ama-cyst akuphi ebuchosheni nokuthi makhulu kangakanani. Lokhu kufana nesifo sohlangothi.

Nazi ezinye izimpawu ezivamile:

• Ukulibaziseka kwenkulumo nolimi. Ngezinye izikhathi, izingane zingase zilahlekelwe ikhono lokukhuluma amagama njengoba zikhula.
• Ukukhula ngokomzimba okulibazisekile. Isibonelo, ukulibazisa ukuqala ukuhamba.
• Ukuthuthukiswa kwengqondo okulibazisekile.
• Ukuthuthukiswa komphakathi okulibazisekile.
• Ikhanda elikhulu noma elincane uma liqhathaniswa nobukhulu bomzimba.
• Ukuncipha kwemisipha (Hypotonia). Umzimba wengane ungase uzizwe ubuthakathaka kakhulu.
• Ubuthakathaka emzimbeni.
• Izinkinga zokucubungula ulwazi lwezinzwa. Isibonelo, izinguquko endleleni abantu abasabela ngayo ekuthinteni noma emsindweni.
• Ukuquleka. Yilokhu esikwaziyo njengokukhubazeka.

Into ebalulekile ukuthi akuzona zonke lezi zici ezikhona kuyo yonke ingane. Ezinye izingane zingase zibe nesici esisodwa noma ezimbili kuphela, kanti ezinye zingase zibe neziningana.

Yiziphi ezinye izinkinga ezingabangelwa yilokhu?

Kwezinye izimo, le porencephaly ibangela ukuthi uketshezi oluzungeze ubuchopho kanye nomgogodla lube namafu, okusho ukuthiImigudu lapho uketshezi lomgogodla (i-CSF) lugeleza khona ingavinjelwa. Lokhu kubangela ukuthi uketshezi luqongelelane futhi ludale ingcindezi ezungeze ubuchopho. Lokhu kubizwa ngokuthi i-hydrocephalus . Uma le ngcindezi ikhula, izimpawu ezikhona zingase zibe zimbi kakhulu noma izimpawu ezintsha zingase zivele. Isibonelo, kungase kube khona ikhanda elibuhlungu, ukuhlanza, kanye nezinkinga zokubona .

Futhi, ngenxa yokuthi i-porencephaly ingabangela ukuquleka, laba bantwana banamathuba amaningi okuthola isifo sokuwa . Abanye abantwana bangase babe nokuvaleka kwemisipha , okuyisimo lapho imisipha iba lukhuni futhi iqine.

Odokotela bakuthola kanjani lokhu?

Ngokuvamile, izingane ezine-porencephaly zibonisa izimpawu zalesi simo ngokushesha nje ngemva kokuzalwa. Izingane eziningi zitholakala zinalesi simo zingakafiki nonyaka ubudala. Ngezinye izikhathi, la ma-cyst angabonakala ku -ultrasound scan yokukhulelwa ngesikhathi umntwana esesesibelethweni. Kulesi simo, udokotela angakwazi ukuthola lesi simo ngaphambi kokuba umntwana azalwe.

Ukuze kuqinisekiswe ukuxilongwa, udokotela kuzodingeka abone izithombe ezinemininingwane zobuchopho bengane yakho. Ukuze wenze lokhu, wena noma ingane yakho kungadingeka ukuthi nihlolwe kanje:

• Ukuskena nge-ultrasound.
• I-CT scan.
• Ukuskena kwe-MRI.

Ingabe ikhona indlela yokwelapha lokhu? Kuphathwa kanjani?

Uma ngikhuluma iqiniso, ayikho ikhambi eliqinisekile le-porencephaly. Kodwa-ke, kunezindlela eziningana zokulawula imiphumela yayo. Ukwelashwa kuhloswe kakhulu ekunciphiseni ukukhubazeka kwezinzwa okwenzekayo.

Isibonelo, uma unesifo esikhulume ngaso, i-hydrocephalus, uketshezi oluningi oluqongeleleke ebuchosheni lungasuswa.

Nazi ezinye izindlela zokwelapha ezingasiza ingane:

• Imithi yokulwa nokuquleka. Lawula ukuqala kokuquleka.
• Imithi yokuthuthukisa ukuqina kwemisipha.
• Imithi yokunciphisa ubuhlungu.
• Ukwelashwa ngokomzimba: Qinisa imisipha yomzimba futhi wenze ukunyakaza kube lula.
• Ukwelashwa ngenkulumo. Nqoba ubunzima bokukhuluma.
• Ukwelashwa Komsebenzi: Zijwayeze ukwenza imisebenzi yansuku zonke wedwa.
• Ngezinye izikhathi ukuhlinzwa kokususa i-cyst kungenziwa.
• Ukuhlinzwa kokukhipha uketshezi oluningi lobuchopho nakho kungenziwa ukuze kususwe uketshezi oluningi lobuchopho.

Into ebalulekile ukuthi akuzona zonke lezi zindlela zokwelapha ezidingekayo kuwo wonke umntwana. Odokotela bazonquma ukwelashwa okungcono kakhulu ngokusekelwe esimweni somntwana.

Liyoba njani ikusasa lomntwana onalesi simo? (Isibikezelo)

Lokhu kunzima ukukusho. Ngoba abanye abantwana abane-porencephaly baba nezinkinga ezithile zezinzwa. Kodwa abanye abantwana bangaphila ngendlela evamile ngaphandle kwezinkinga. Ubukhali bezimpawu buyahlukahluka kakhulu kumuntu ngamunye.

Ikusasa lomntwana lincike ngobukhulu bama-cyst ebuchosheni, indawo akuyo, inani lama-cyst, nokuthi athinta kanjani ingane ngayinye. Kodwa-ke, ngokutholwa kusenesikhathi kanye nokwelashwa okufanele kanye nokwelashwa, izingane eziningi zingaphila impilo ephumelelayo nephumelelayo.

Ingabe i-Porencephaly ingavinjelwa?

Lesi simo asinakuvinjelwa ngaso sonke isikhathi. Ngoba kunzima ngathi ukulawula izinto ezibangelwa izici zofuzo. Kodwa-ke, ukukhulelwa okunempilo kunganciphisa ingozi yokuba ingane yakho ithole lesi simo ngezinga elithile.

Kubaluleke kakhulu ukugwema ukusebenzisa kabi utshwala noma izidakamizwa ngesikhathi sokukhulelwa. Uma unesifo sikashukela sokukhulelwa, landela imiyalelo kadokotela wakho ngokucophelela. Kufanele futhi uzame ukuzivikela ezifweni.

I-Genetic Porencephaly yisimo esingadluliselwa enganeni ngezinye izikhathi uma omunye wabazali ephethe i-gene eguquliwe . Ukuhlolwa kwe-genetic kungasiza ekunqumeni ukuthi wena noma umlingani wakho niphethe i-gene. Ukukhuluma nomeluleki wezakhi zofuzo kungakusiza uqonde ingozi yakho yokudlulisela i-gene enganeni yakho.

Yiziphi ezinye izikhathi okufanele ubonane nodokotela ngazo?

Uma ingane yakho itholakale ukuthi inesifo noma isolwa ukuthi ine-porencephaly, kufanele ubone udokotela ngokushesha uma noma yiziphi zalezi zimpawu ezilandelayo ziqala noma ziba zimbi kakhulu:

• Ubuhlungu bekhanda
• Ukuhlanza
• Izinkinga ngokulinganisela noma ukuhlanganisa
• Ukuquleka/ukufa
• Ukukhubazeka kwanoma iyiphi ingxenye yomzimba wabo
• Izinguquko zombono

Yimiphi imibuzo ebalulekile okufanele uyibuze udokotela?

Ungabuza udokotela imibuzo efana nale:

• Uma sinenye ingane, mangakanani amathuba okuthi leyo ngane nayo izoba ne-porencephaly?
• Ingabe kuwumqondo omuhle ukuthi umndeni wethu uhlolwe izakhi zofuzo?
• Ingabe ingane yami izodinga ukuhlinzwa ukuze kususwe ama-cyst noma uketshezi oluningi ebuchosheni bayo?
• Yiziphi izindlela zokwelapha ezingcono kakhulu zokusiza ingane yami ukuthi ibhekane nokubambezeleka kokukhula?

Okokugcina, nakhu okushiwo abazali... (Umyalezo Wokuya Ekhaya)

I-Porencephaly yisimo esingavamile kakhulu. Izingane ezinalesi simo zingaba nokukhubazeka ngokomzimba nangokwengqondo, ngezinye izikhathi okuncane, ngezinye izikhathi okukhulu. Kodwa khumbula, ngokuxilongwa kusenesikhathi kanye nokwelashwa okudingekayo kanye nokwelashwa, izingane eziningi zingaphila impilo enhle kakhulu, ejabulisayo nephumelelayo. Awuwedwa, odokotela, abelaphi, nabanye abaningi bakhona ukukusiza wena nengane yakho. Into ebaluleke kakhulu ukungalilahli ithemba futhi unike ingane yakho uthando, ukunakekelwa, kanye nokusekelwa abakudingayo.

I-Porencephaly , izifo zobuchopho, izifo zobuntwana, izifo zofuzo, izifo zezinzwa, ukubambezeleka kokukhula